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The Anatomy of an MS Flair-up!
During a flair-up of MS or as you will soon see; symptoms can be from many sources or disorders other than MS. They can occur during a flair-up or remain constant. Neurological diseases produce some strange sensations. Please keep in mind that these are only examples. This is not a complete list; but the most commonly experienced symptoms.
* Pain upon movement of your eye/blurred vision-even temporary blindness, commonly known as Optic Neuriitis.
* Trouble walking on an uneven surface. Carpeting that is too spongy, sand, tall grass; even being unable to walk in the dark. Walking as if you are walking through quick sand. Upon closing your eyes; knowing where your body parts are in relation to space, i.e., close your eyes and see if you can tell in what position your leg is in. Is it tucked under you? Is it stretched out? Do you know at all?
*Extreme heaviness in the legs, becoming even worse with over-exertion
* One side of your torso or body being numb with tingling and/or a burning sensations-numbness in any body part /face or even your scalp
* Spasms, usually in the legs, but can be in various areas of the body.
* Slurring speech, not being able to "find" words you want to use, mixing words up in a sentence.
* Short-term memory problems, remembering dates, people's name, days of the week, etc.
* Unable to stay on task, then having trouble restarting the project you were trying to accomplish
* Excess noise or sounds being very irritating; as in hearing loud music, too many people talking at one time, resulting in total confusion
* PAIN-burning, stabbing, achiness, pulling sensations in a muscle, cramping, etc. Some MS patients experience headaches when in a flair-up.
* Bowel or bladder problems, running the full gambit-from not being able to hold your urine, dribbling as soon as you think of urinating and not being able to control it at all, not fully emptying your bladder, (same symptoms with bowels)constipation (usually) but can alternate between constipation and diahhrea
* Fatigue-unlike anything you have experienced before. Not your usual kind of tired after a busy day, but overpowering fatigue, even after a full night's rest or fatigue after very simple exertion or heat.
* Intolerance of heat/some people intolerance to cold-symptoms becoming more pronouced if overheated/usually abating when your body temperature returns to normal (please keep in mind that if you are already in a flair-up your symptoms will increase during overheating but will decrease in severity; but not disppear after returning to your normal body temperature
* Flair-ups occur shortly after getting over any kind of infection-especially a respiratory infection. Stress can cause symptoms and put you into a flair-up. Sometimes when the stressor is removed, the symptoms will disappear.
* Walking can become difficult/for some impossible. Some people cannot walk at all during a flair-up and are wheelchair bound, (or using a walker or cane) but can resume normal walking when their flair-up is over. Of course we already know that some of our members are already in wheechairs everyday.
* Symptoms lasting more than 24 hours-sometimes lasting weeks or months and in some people with MS, never returning to your pre-flair state.
* Depression/mood swings
* Problem solving skills are affected. As with me, not knowing how to put a rubber band in my hair; lasting several seconds...to only give one example.
* Dizziness/vertigo-severe balance problems. Unable to walk without running into things or having to grab things to hold on, while trying to walk.
* Hearing difficulties. Usually one ear, not in both.
* Lack of flair-ups during pregnancy. Usually within 6 months of giving birth, the mother will go into a flair-up.
* Manual dexterity/lack of coordination
As I said in the beginning, this is not a complete list. I am hoping after compiling this list, it may help some that are diagnosed, better understand some of their symptoms. For those undiagnosed, to possibly see themselves WITH these symptoms. Maybe realize by reading over this list, that you will be able to see how confusing your Neurologist can be, when trying to diagnose MS; as these kinds of symptoms can be the result of SO MANY other disorders.
MS can be tough to diagnose. For sure! It's even harder when you have these kinds of symptoms and all your testing comes back negative. MRI's come back clear. Nothing to explain what you are going through.
'Patience' is one of the hardest words to hear, when you are waiting for the doctor's to tell you what's wrong. The symptoms are so vast and mimic so many things, that the words "time and patience," are the only things another person can offer you. Sometimes our best advice is to find another doctor.
I am not a doctor...only a person that has been living with MS for a long time. If there are any of you that want to ask any questions, I will be glad to try to answer them for you. If I can't answer them, I will tell you; but will promise to direct you to someone who may better explain. No one has all the answers....no one. Or certainly there would be a cure and a reversal of MS by now.
Try to remember when you are told to "give it time and be patient," that you are also being told that you are not alone. I, like so many others, will 'wait' with you. I will always promise to do what I can as a human being and someone with MS, to do all I can to help you get through the tough times and rejoice with you during the happy times.
God bless each and every one of you. You are all in my prayers. You have my word.
Heather
* Pain upon movement of your eye/blurred vision-even temporary blindness, commonly known as Optic Neuriitis.
* Trouble walking on an uneven surface. Carpeting that is too spongy, sand, tall grass; even being unable to walk in the dark. Walking as if you are walking through quick sand. Upon closing your eyes; knowing where your body parts are in relation to space, i.e., close your eyes and see if you can tell in what position your leg is in. Is it tucked under you? Is it stretched out? Do you know at all?
*Extreme heaviness in the legs, becoming even worse with over-exertion
* One side of your torso or body being numb with tingling and/or a burning sensations-numbness in any body part /face or even your scalp
* Spasms, usually in the legs, but can be in various areas of the body.
* Slurring speech, not being able to "find" words you want to use, mixing words up in a sentence.
* Short-term memory problems, remembering dates, people's name, days of the week, etc.
* Unable to stay on task, then having trouble restarting the project you were trying to accomplish
* Excess noise or sounds being very irritating; as in hearing loud music, too many people talking at one time, resulting in total confusion
* PAIN-burning, stabbing, achiness, pulling sensations in a muscle, cramping, etc. Some MS patients experience headaches when in a flair-up.
* Bowel or bladder problems, running the full gambit-from not being able to hold your urine, dribbling as soon as you think of urinating and not being able to control it at all, not fully emptying your bladder, (same symptoms with bowels)constipation (usually) but can alternate between constipation and diahhrea
* Fatigue-unlike anything you have experienced before. Not your usual kind of tired after a busy day, but overpowering fatigue, even after a full night's rest or fatigue after very simple exertion or heat.
* Intolerance of heat/some people intolerance to cold-symptoms becoming more pronouced if overheated/usually abating when your body temperature returns to normal (please keep in mind that if you are already in a flair-up your symptoms will increase during overheating but will decrease in severity; but not disppear after returning to your normal body temperature
* Flair-ups occur shortly after getting over any kind of infection-especially a respiratory infection. Stress can cause symptoms and put you into a flair-up. Sometimes when the stressor is removed, the symptoms will disappear.
* Walking can become difficult/for some impossible. Some people cannot walk at all during a flair-up and are wheelchair bound, (or using a walker or cane) but can resume normal walking when their flair-up is over. Of course we already know that some of our members are already in wheechairs everyday.
* Symptoms lasting more than 24 hours-sometimes lasting weeks or months and in some people with MS, never returning to your pre-flair state.
* Depression/mood swings
* Problem solving skills are affected. As with me, not knowing how to put a rubber band in my hair; lasting several seconds...to only give one example.
* Dizziness/vertigo-severe balance problems. Unable to walk without running into things or having to grab things to hold on, while trying to walk.
* Hearing difficulties. Usually one ear, not in both.
* Lack of flair-ups during pregnancy. Usually within 6 months of giving birth, the mother will go into a flair-up.
* Manual dexterity/lack of coordination
As I said in the beginning, this is not a complete list. I am hoping after compiling this list, it may help some that are diagnosed, better understand some of their symptoms. For those undiagnosed, to possibly see themselves WITH these symptoms. Maybe realize by reading over this list, that you will be able to see how confusing your Neurologist can be, when trying to diagnose MS; as these kinds of symptoms can be the result of SO MANY other disorders.
MS can be tough to diagnose. For sure! It's even harder when you have these kinds of symptoms and all your testing comes back negative. MRI's come back clear. Nothing to explain what you are going through.
'Patience' is one of the hardest words to hear, when you are waiting for the doctor's to tell you what's wrong. The symptoms are so vast and mimic so many things, that the words "time and patience," are the only things another person can offer you. Sometimes our best advice is to find another doctor.
I am not a doctor...only a person that has been living with MS for a long time. If there are any of you that want to ask any questions, I will be glad to try to answer them for you. If I can't answer them, I will tell you; but will promise to direct you to someone who may better explain. No one has all the answers....no one. Or certainly there would be a cure and a reversal of MS by now.
Try to remember when you are told to "give it time and be patient," that you are also being told that you are not alone. I, like so many others, will 'wait' with you. I will always promise to do what I can as a human being and someone with MS, to do all I can to help you get through the tough times and rejoice with you during the happy times.
God bless each and every one of you. You are all in my prayers. You have my word.
Heather
Can I get back to you with my opinions? Remember I am not a doctor, but would be glad to give you my thoughts, concerning your questions. I have repairmen coming and my Internet connection will be down for awhile.
Will try to get back on later to add my comments.
Hope that's alright.
Heather
Will try to get back on later to add my comments.
Hope that's alright.
Heather
Wow!!! What a great list. This really has helped me with my situation and I have a few questions if you have time.
My situation started a couple of months ago, right after a friend of mine was misdiagnosed with ALS. I'm an overly empathetic person and so this dx just really rocked me. Five days later I awakened with horrible pain in both calves. It felt like I had walked around Disneyland all day. It didn't feel like a pulled muscle. A couple of days later, my calves started twitching. I could even see the twitches. Then a couple of weeks later, my forearms began to get incredibley fatigued. I then went to my neighbor who is a GP because I could get into him the same day (On a side note, he has a specialized practice where people pay $1700 dollars a year to see him and he won't let me pay him at all!!! He won't even take a co-pay! Such a GOD-SEND!). My GP did a full blood panel and then got me into a neurologist on the same day. Neuro did psychological test on me and then an EMG. Everything, including the bloodwork, came back normal. Drs. thought it must just be a virus and told me to wait. The next week, pain started in my back and stomach muscles. Went back to neuro and had MRI with and without contrast of the neck and brain. He also did a blood test for Myasthenia Gravis, Epstein Barr and CPK. Again everything was normal. He thinks it's viral. Meanwhile my fatigue is getting worse and worse. Then my husband threw his back out and I had to take care of him and my 3 young children and it about did me in. I can no longer take care of my twins (who will be 3 in Jan.) and I'm in bed most of the day. Hot baths had been helping the pain and so I got into a hot shower last Friday and stayed there for about 20 minutes. After I got out, I was so fatigued that I could barely move and breathing was even tiring for me. This lasted for about 1 1/2 hours. We called neuro and he said that heat can make whatever I have worse. Didn't realize at the time that that was an MS sign. Saw neuro last Monday and he ordered a spinal tap and put me on prednizone (sp?). So, I know that there is still a 5% chance that this could be MS and truthfully many of my symptoms are that of MS. I've also experineced the buzzing/burning feeling in my calves, back and arms. My questions:
How long do flare-ups last?
Can MS affect the entire body like it has with me?
Does exhertion make the symptoms worse?
OF the 5% who don't show lesions, do they have a lighter case of MS or is it just too early to see lesions? Or do some MS patients never show lesions?
My spinal is scheduled for next Thursday. So I still have to wait. The unkown is driving me crazy and I'm just so sad. How do you cope?
Thanks so much for any advice. I can't tell you how it helps to read about you guys.
CarolynV
My situation started a couple of months ago, right after a friend of mine was misdiagnosed with ALS. I'm an overly empathetic person and so this dx just really rocked me. Five days later I awakened with horrible pain in both calves. It felt like I had walked around Disneyland all day. It didn't feel like a pulled muscle. A couple of days later, my calves started twitching. I could even see the twitches. Then a couple of weeks later, my forearms began to get incredibley fatigued. I then went to my neighbor who is a GP because I could get into him the same day (On a side note, he has a specialized practice where people pay $1700 dollars a year to see him and he won't let me pay him at all!!! He won't even take a co-pay! Such a GOD-SEND!). My GP did a full blood panel and then got me into a neurologist on the same day. Neuro did psychological test on me and then an EMG. Everything, including the bloodwork, came back normal. Drs. thought it must just be a virus and told me to wait. The next week, pain started in my back and stomach muscles. Went back to neuro and had MRI with and without contrast of the neck and brain. He also did a blood test for Myasthenia Gravis, Epstein Barr and CPK. Again everything was normal. He thinks it's viral. Meanwhile my fatigue is getting worse and worse. Then my husband threw his back out and I had to take care of him and my 3 young children and it about did me in. I can no longer take care of my twins (who will be 3 in Jan.) and I'm in bed most of the day. Hot baths had been helping the pain and so I got into a hot shower last Friday and stayed there for about 20 minutes. After I got out, I was so fatigued that I could barely move and breathing was even tiring for me. This lasted for about 1 1/2 hours. We called neuro and he said that heat can make whatever I have worse. Didn't realize at the time that that was an MS sign. Saw neuro last Monday and he ordered a spinal tap and put me on prednizone (sp?). So, I know that there is still a 5% chance that this could be MS and truthfully many of my symptoms are that of MS. I've also experineced the buzzing/burning feeling in my calves, back and arms. My questions:
How long do flare-ups last?
Can MS affect the entire body like it has with me?
Does exhertion make the symptoms worse?
OF the 5% who don't show lesions, do they have a lighter case of MS or is it just too early to see lesions? Or do some MS patients never show lesions?
My spinal is scheduled for next Thursday. So I still have to wait. The unkown is driving me crazy and I'm just so sad. How do you cope?
Thanks so much for any advice. I can't tell you how it helps to read about you guys.
CarolynV
Thank you so much for all of this information. I know it has helped me so I'm real sure that it will help a lot of others out there. Especially the undiagnosed. It was wonderful of you to spend so much time getting everything together for us.
Thank you and I'll be praying,
Carol
Thank you and I'll be praying,
Carol
I tried putting some of those things together when I wasn't feeling over fatigued or in a brain fog. I just came out of a flair-up about two weeks ago and dern if I am not feeling like I am going into another one. This is unusual for me and as you know, I have had MS for 12 years.
I have an appt. with a new Neurologist tomorrow. Hopefully she will order an MRI immediately, to see what is going on. It's been two years since my last MRI. My primary care physician wants me back on an Interferon. She thinks I have some brain stem involvement going on this time and I have had alot of trouble regulating my body temperature. First I thought it was menopause, but I believe what I am experiencing, goes way beyond this. We will see. We won't even talk about the increased spasms and pain...that's another totally subject.
I thank you for your prayers. You are such a lovely woman and always so gentile (us I meant gentile) with those on the forum. I really do admire you, even with everything that YOU go through daily. All of you are emphatically, "Angels with Invisible Wings," and no one will ever convince me otherwise. God Bless ALL of you.
Heather
I have an appt. with a new Neurologist tomorrow. Hopefully she will order an MRI immediately, to see what is going on. It's been two years since my last MRI. My primary care physician wants me back on an Interferon. She thinks I have some brain stem involvement going on this time and I have had alot of trouble regulating my body temperature. First I thought it was menopause, but I believe what I am experiencing, goes way beyond this. We will see. We won't even talk about the increased spasms and pain...that's another totally subject.
I thank you for your prayers. You are such a lovely woman and always so gentile (us I meant gentile) with those on the forum. I really do admire you, even with everything that YOU go through daily. All of you are emphatically, "Angels with Invisible Wings," and no one will ever convince me otherwise. God Bless ALL of you.
Heather
Heather~ So sorry to hear you are mid-flare! Gosh, and you are all over the forum. I can't believe you have put together such beautiful pieces while not feeling well. I keep reading this over again, because it is so interesting and informative. I can't imagine how long it must have taken with you not feeling well!
Thanks so much! I will add you to my prayers tonight!
Zilla*
Thanks so much! I will add you to my prayers tonight!
Zilla*
Thanks so much for responding so quickly even though you are feeling un-well! Sorry to hear you are going through a flair up...I can relate! I guess the boneheaded dr. decided that he was very concerned about my symptoms as well since he ordered the MRI so quickly! I am ecstatic that I am FINALLY having the MRI but now I am getting pretty worried about what they might find! I appreciate that this site is here and would sure like to have known about it sooner. I did pass on the info about this site to my b-in-laws girlfriend as her daughter is experiencing some serious symptoms with losing her eyesight completely and numbness on one side of her body and her dr. has just "bumped" her appointment to mid December because "he has an patient that needs to be seen sooner". This was after this dr. was supposed to make appointments for her for an MRI and then went on vacation for 2-3 weeks and didn't bother to make the arrangements for her appoinments before he left! His nurse apparently says that her file is on his desk but that she has not been told to do anything. I figure that I would ask the nurse, what sort of nurse is she? Can she not take it in hand and just ask the dr. if she can go ahead and make the appointment, she could fill out the requisition and all the dr. has to do is sign it? The poor girl has a little boy she is raising on her own and understandably scared to death and like the Mother said "at least if the appointment was made and they have to wait until the new year it wouldn't be so bad but the appointment isn't even made!"
It is all very frustrating to all of us and I guess there will be no magic cure. It just makes me sick that here in our city they are planning to put in a bunch of new "spray parks" and spend millions of dollars on them while they could be spending the money on another MRI and some people to work with them instead and be saving lives. We only have on average 4 months of warm weather per year...what the **** do we need new spray parks for!
Anyway, I am getting way off subject here! ha ha I will let you know what the results are as soon as I know ok? Again, thanks so much for your support Heather and I hope that you are feeling better soon!
Rena
It is all very frustrating to all of us and I guess there will be no magic cure. It just makes me sick that here in our city they are planning to put in a bunch of new "spray parks" and spend millions of dollars on them while they could be spending the money on another MRI and some people to work with them instead and be saving lives. We only have on average 4 months of warm weather per year...what the **** do we need new spray parks for!
Anyway, I am getting way off subject here! ha ha I will let you know what the results are as soon as I know ok? Again, thanks so much for your support Heather and I hope that you are feeling better soon!
Rena
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